October 28

Bob writing this time.   Interesting week so far…  Monday noon’ish until dinner time was spent in the UW Emerg Dept.  Betsy was not feeling good combined with some ‘fluttering” in the chest.   Lot of testing including EKG, and more blood drawn…  They decided no issues.  Interesting part was a decision by the ER Dr to seek advice from the Pulmonary group…  5 minutes later and three of them were in the room.  It got their attention..   Again…  ultimately it was decided that it was probably related to a cold or similar..  Home for dinner.. 

Betsy is still not feeling well but trying to get back to the rehab group to stay on top of the physical fitness end of it. 

Then the week got worse, but ended well.

Bets had a melt down on Tuesday, and we spent some time questioning what we are doing in Seattle, then the full gambit of consequences and the ramifications of leaving.  We briefly discussed ‘what if’ they cannot find an appropriate donor, working with hospice, and a lot of other stuff.  Neither of us has been sleeping well for the past few weeks.  But, the week got better.  Visitors arrived, moral improved, and then Betsy and Libby went shopping.  She must be feeling better.  They spent over an hour in Jo-Ann Fabrics.

Her oxygen consumption still is still increasing.  Showers and morning dressing are still challenges and are probably the most difficult time of the day.  It is difficult from a caregiver / spouse viewpoint to watch her decline physically.  In February, we will have been married for 42 yrs.  We started dating just over 49 years ago.  We are getting a little older

More visitors expected in the next few days and a dinner engagement with Teri and Dan.  Promises to be a better week. 

Saturday, October 22

Well, it seems they never really took me off the list this last time.  The Doctors are still at odds about the infection, but at least I’m still on the list for now and they will have to make the evaluation if a lung becomes available.  Have an appointment with a urologist on the 7^th and not sure what that is all about.  Time will tell.

Much slower week but that is about to change for the next two weeks.   Libby and Reno, then Nancy, then Sheri and Peggy, then Jim/Marci/Cassie and their friend Sara.  Maybe in the middle somewhere a lung will come along.

Violet spent Saturday morning at the beauty parlor (PetSmart) and got a bath and groom.  She looks good, but appears to be glad to be home with us. 

Had a nice visit with Dan and Carlyn who are making their way back to Kansas after spending several months with family on Vashon Island.  It as good to see them again and glad they are able to make use of our place in Cove on their journey.  They had a ‘problem’ with some debris on the road near Pendleton, so will spend a few extra days in Cove awaiting repairs. 

Bob bought a nice notebook size computer with lap desk so I can sit on the couch and write my life story, something I have been wanting to do for Cassie.  It is wonderful and good therapy for me.  Guess you could say this was a high priority item on my bucket list! 

To whoever left a polished stone with the word ‘courage’ on it on the front seat of our truck before we left home in April, thank you so much!  I keep it with me always and would love to know who was so thoughtful.  It means a lot to me….

My sister broke her ankle in 3 places while visiting her daughter in Tacoma and had to go home to have surgery.  She now has screws in her ankle and we hope for a quick recovery!  Bob hopes her screws aren’t very loose.. 

Thursday, October 13

On again, off again, on again, ‘off again’….  Saw Dr. Raghu today and he said I cannot have a lung transplant until this infection (bacteria) is completely gone so it appears I am off again for now.  Met with an infectious disease doctor who requested another urine test and is scheduling an ultra sound, possibly tomorrow.  They want to rule out any kidney stones and such even though I don’t have symptoms.  Once that is done they will determine the next course of treatment, possibly IV antibiotics for a couple of weeks.  Had a PFT (pulmonary function test) and it was the hardest one yet.  Thought I was going to pass out right there but managed to get through it.  Function has gone down since the last test which was only a month ago and I’m not surprised.  It is getting harder and harder to take a shower and dress in the morning.  I put it off as long as I can!!!!  Unfortunately, (or maybe it’s a good thing) most days we have somewhere to be and I have to get moving earlier than I would like! 

We really enjoyed our visit with Mary Jo & Jerry.      Visited, ate good food and played some cards!  Even made a shopping trip to Joann’s for more yarn and that was fun.  Had lunch with John Reed (a friend of Mary Jo & Jerry’s who we met on our trip north) who had a kidney transplant about a month ago and it was good to see him also.  He is here from Alaska and hoping to go home soon.

We will post another blog as soon as we hear what the next step will be.  Dr. Raghu is doing everything possible to make things happen so I can get back on the list.  He had the infectious disease doctors come to his clinic to see me and they are all working towards one goal: getting me ready for a transplant.  I think Dr. Raghu is getting a bit concerned that I am declining at a faster pace and he wants to make sure I get a chance for a transplant.  More to come……

Bob’s watering / flower job is quickly coming to an end.  Weather / season changes are doing in the flowers.  They are sort of dying on the vine?  No more breakfast or potlucks to keep him busy   Gotta figure something else for him to do..  J  

Thanks again to all of you.  Your support means a lot.  

Saturday, Oct 8

As of today I have been reinstated on the lung transplant list.  The pre-lung transplant nurse, Kim, says I am ‘right up there’ on the list and ‘in a good spot’, whatever that means….  She says they have been busy the past 3 weeks but didn’t indicate how many transplants have been done. 

I will need to follow up with several doctor appointments regarding the low count bacteria that is still indicated by the tests.  Also need to have a urine test every Monday until this issue is resolved.  Whatever it takes….. 

Nephew Rick and wife Katie came to visit yesterday and it was great to see them.  Katie’s sister and family live fairly close and they are visiting them this week-end.  Found out Katie’s brother-in-law works right across the road from the Maltby Café!!! 

Mary Jo and Jerry will be here tomorrow for a few days.  It will be great to see them too and spend some time together.  They are bringing their motor home and will stay in the park here.  While they are here, we will go with them to visit our friend John from Alaska, who just had a kidney transplant

Our granddaughter Cassie auditioned for Honor Choir and was accepted so that was exciting news!  We are very proud grandparents….  

Tomorrow is the monthly pancake breakfast in the park.  Of course Bob will be helping with that and he does enjoy himself.  The staff appreciate him too.

Thanks to everyone for your love and support during this ‘interesting’ segment of our lives.  Family and friends are what keeps us going and we couldn’t get through it without you all.   

Sunday Oct 2.

We made it back from Cove.  We took a full car load home, and returned with another full car load.  ??  Not sure how that happened, but hopefully the return load will be better used than the previous.  

It was good to be home, somewhat.  Not knowing when we will return was difficult.  Seeing our great neighbors was great.  Violet was really curious about the mules, horses, and cows.  The deer really had her attention.  She had an evening play with Bell.  The trip back here must have been exhausting because she slept all night.

Bets had quite a bit of difficulty in breathing at the higher altitude (3500’).  The concentrator would not put out full capacity for some reason and that hampered movement around the house. 

Betsy here….  Home was bittersweet for me.  It was great to be home in our great surroundings but I couldn’t do anything and it was difficult just moving from place to place.  Have determined that I will be unable to go home again until I get a ‘new’ lung.  It is just too difficult.  We did get into the dentist to have our teeth cleaned thanks to the wonderful staff at SeaBrite Dental.  It was very short notice but they managed to fit us in.  We also had haircuts by our favorite hair person, Ginger.  Had dinner with Richard and Libby at Mamacita’s and saw our neighbors/friends, Wayne & Rosemary and Ken & Crystal who have been watching our house for us.  We appreciate everything our friends do for us while we are gone!  It makes being here easier.  Didn’t get a chance to see many people since it was so difficult for me to get around and we are sorry about that. 

Have a doctor appointment this afternoon and hoping to be back on the list soon.  I will go back on the list at the same place I was.  It is not a first come, first served kind of thing, it has to do with lots of other factors relating to your condition.  Will post another blog when I’m back on the list or next week-end, whichever comes first…..